Last summer, illness meant I finally had to relinquish my job at The Autism Base. I’d been reducing my hours incrementally over time till all I had was one day a week. I held dearly to it for as long as I could because of how special The Base was to me. I loved that one day.

I was doing a deal with myself – for the sake of that one day I would set aside and drive against how ill I felt, to turn up in the outside world and be productive and engaging, and feel valued. Good for my mental health, surely?

The problem was that the pushing through meant I would still not be recovered from that one day by the time it rolled around the following week. I was keeping my symptoms at a continual peak and locking them in. The fatigue was deep, brutal and relentless.

I may have carried on like this indefinitely if it wasn’t for the accident I had in March of last year: Falling from the attic in a moment of absent mind, I fractured my back, hip and pelvis. But the pain and incapacitation were at least visible, measurable, unquestionable.

When my bones healed I returned to work initially, but the driving through was no longer tolerable. I couldn’t ignore its detriment. I had to let go this thing I treasured and I finished work at the end of the academic year.

Dismantling life as you know it means serial bereavement. Goodbye purpose, self-worth, colleagues, structure. Bye bye to those who won’t understand the limits of how you have to live now. And the choices you’re forced to make.

Hello benefits system humiliation and the work of proving the extent of your illness and debilitation when you have zero zero point zero resources; hello the ever present terror of what our government will do next and falling into the hole of too ill to work, too poor not to.

Hello to the existential horror that this thing might never end and that your life may pass with you never having ‘fulfilled your potential’.

Goodbye to your fantasy version of what a vital and valuable human being looks like.

But the longer you struggle against your new reality, the deeper illness takes hold.

You’ll stumble between random boom days of activity where you think “Look, I’m cured” only to be hit by resulting days, weeks, months lost to a distressing whole-system shutdown that no amount of bedrest will release you from.

And then you’ll be devastated all over again.

Find yourself engulfed by despair, gripped by an ugly envy of the non-ill and their energy and their plans and their explicit achievements.

The cycle will repeat itself.

Until you give in to what is.

Then you might find another way to live.

You might say to yourself “I accept my limits and I agree to work with them every single day. I will be grateful for my tiny wins no matter how insignificant they seem to others.”

You might commit to the tedious-sounding but heroically life-saving practice of pacing.

Pacing will help. It will show you how small incremental daily actions are not nothing.

And you’ll be pleased.

You’ll fall off the wagon again. Get into denial again. Boom and bust again. Despair again.

For a while.

But then you’ll start accepting again. Pacing again. And it will help again.

You’ll notice how you’re the kind of wonderful person who takes pleasure in small things.

And your silver linings will become clear to you.

My silver lining is that there is now nothing standing in the way of me and a creative habit.

My available envelope of activity may be minimal, but I can tend it like a garden: if I give it all to health and creative work, none to self-sabotage, the good of that may spread too.

Over the last eight months, this is the way I have been trying to manage my life. Trying to make good routines. Good daily choices.

Things that are painful, unresolved and overwhelming have been getting in the way.

But I keep coming back. Will always come back.

Trying. Failing. Trying. Struggling. Trying. Faltering. And sometimes getting it right.

And sewn in to my silver lining has been the space to lean into my creative relationship with my sister Maria. We share chronic illnesses, traumatic childhoods and neurodivergence too That’s a lot. It takes so much work to negotiate. But it also gives us shared understanding. We are, and have forever been, figuring out how to put what matters from it all out into the world with hope.

It’s Spring. I feel it blossoming.